Today is #GivingTuesday!

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I’m a child of the 80’s, and I grew up with songs like “We Are The World”. I took that message to heart. It was written for the people starving in Africa, but it applies so well to the situation we are facing with brain cancer. Here are the lyrics:

“There comes a time when we heed a certain call
When the world must come together as one
There are people dying
And its time to lend a hand to life
The greatest gift of all

We can’t go on pretending day by day
That someone, will soon make a change
We are all a part of Gods great big family
And the truth, you know,
Love is all we need

[Chorus]
We are the world, we are the children
We are the ones who make a brighter day
So lets start giving
There’s a choice we’re making
We’re saving our own lives
Its true we’ll make a better day
Just you and me

Send them your heart so they’ll know that someone cares
And their lives will be stronger and free
As God has shown us by turning stones to bread
So we all must lend a helping hand

[Chorus]

When you’re down and out, there seems no hope at all
But if you just believe there’s no way we can fall well well well well
Let us realize that a change can only come When we stand together as one”

If you want a flashback, check out the video: https://www.youtube.com/watch?v=M9BNoNFKCBI  I love that it starts off with fellow Alabamian, Lionel Ritchie! Then goes on to include literally the biggest stars at the time, including one of my teenage obsessions, Billy Joel. Seriously. It’s phenomenal even today. Stevie Wonder, Springsteen, Willie Nelson, Quincy Jones, Cyndi Lauper, Ray Charles… I could go on, but you get the idea.

It’s exciting to me that social media is coming together to draw attention to a worthy cause like giving back to your community. There are so many ways to give back, but the two most obvious are volunteering and donating. We would love it if you would join our fight against brain cancer, but if not our cause, please find some way to make a difference. The world CAN be a better place, but we must all live with the intention of making it so.

On our website, http://www.dragonmasterfoundation.org, we have a list of resources that help families and patients who are fighting brain cancer. They are listed by state, so you can find one near you (hopefully).  We would also love to help you plan an event in your city to raise awareness and money for brain cancer research. Or if you really want something simple, you can make a tax-deductible donation here: http://www.wichitacf.org/donate/dragon-master.php

Whether it is our foundation or some other group, we’d love to hear what you are doing for #GivingTuesday. Drop us a note here or on Facebook or Twitter.

It’s A Revolution, I Suppose

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This past weekend I had the opportunity to meet some women I had previously only known through Facebook. We traveled two and a half hours to meet with about 30 ladies who have all been caregivers to a loved one with brain cancer. It was cathartic, energizing, sad and joyous. They are amazing people.

As I was talking to them, I realized that though we talk a lot on Facebook, they didn’t really know what the Dragon Master Foundation is or what we hope to accomplish. They asked, and I told them my vision for the foundation. They all seemed excited and supportive. They told me their stories – some of which made me downright angry.

I can’t share the stories they shared with me. Those are for them to tell, but I can tell you what I told them.

We started Dragon Master Foundation because of one main incident. We heard Dr. Anna Barker speak last October, and she brought up and quickly dismissed her dream to have thousands of genomes in a database where she could compare the data. It’s a ridiculously large dream for “mere mortals”, but that type of technology is already in use by big business and governments. It’s how the NSA tracks all the phone calls and emails they collect. It’s how Google knows what you bought online and how it suggests other products. It exists. It is not being made accessible to these researchers. Why? Well, it is expensive, for starters. A database the size and scope of what they need will cost millions of dollars. And that is just to build the empty database! Collecting the data that they need to go into the database could potentially cost even more… unless…

What if we could find a way for the existing institutions to work together? What if we could compile all the data they have, make it easier for them to access and study, and then also give them access to thousands of other records? So researchers would go from looking at 50-100 records to looking at several thousand. Patterns would be easier to spot.

The technology exists to do that, but the project is so large that no one has had the funding to use it. That’s where we come in. Dragon Master Foundation is going to build a database that will be accessible to member institutions to use. It will have genome data, but it will also be able to house clinical data, and environmental data.

Precious little is known about what might cause brain cancer. The few available drugs work for some people, some of the time. We need more information available to the researches so they can begin to understand why that is the case. Patients and caregivers frequently credit diet, exercise, and other environmental data as the key to longer survival, but that data isn’t being widely studied. There are so many other factors to keep track of, there simply isn’t room to store that kind of stuff, too.

We want to change all that. We want to build the researcher’s dream database. They need the proper tools to fight this beast. And guess what? Once we compile this kind of data, there is no telling what other implications it may have! This is an investment in our future – our children’s future – and we need your help.

If you know someone who wants to build a better world for research (doctors, scientists, programmers, etc), please tell them about our project. We welcome collaboration, and we plan to be the most valuable resource these doctors and researchers have.

And if you are wondering about the title of this post, go listen to “Radioactive” by Imagine Dragons. I could write a whole other post on this song and the inspiration I get from this band. Maybe I’ll do that!

Five Things You Can Do To Save Lives

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Since Alexander Moore already took the best blog title (see his post here:https://alexandamymoore.wordpress.com/2013/05/01/may-day-may-day/#comment-808), I’m going to go with the tried and true list. You see, today is May 1st. The first day of what the U.S. calls Brain Cancer Awareness Month. For many of us, it is every month because we have seen first hand the damage this particular cancer can do.

I’ve talked about this before, but here’s a little recap if you are new. Brain cancer does not discriminate. It can happen to anyone at any time. They don’t know what causes it. You can live a healthy lifestyle or be a complete degenerate.

I have a few theories on why you don’t hear about brain cancer much. Bear with me on this for a minute because I believe it is part of the reason why brain cancer doesn’t get as much attention as some of the other cancers.

When a person is diagnosed with brain cancer, it is frequently in a stage that requires immediate attention. There are not clear winners on what treatment to choose, so that means you have to research for yourself what course of action to take. Unfortunately, a lot of the reasons you would be diagnosed with brain cancer are also things that can impact your ability to reason through these situations. Fatigue, extreme headaches, and confusion are a common part of the symptom package sometimes rendering the patient a less than active participation in the search for treatment options. Add to that that the patient may be too old or too young to use today’s research tools effectively, and you can begin to see a problem.

It doesn’t stop there, though. Let’s say you are patient who doesn’t have debilitating symptoms (like my son was) and you are of an age to both understand some of the research and use the research tools (like some of my friends are). Good for you! But now, you have to decide if you want the world to know that you have a disease that could impact your cognitive skills. How will your employer react? Your friends? If you have a “good” prognosis, you may decide to tell as few people as possible so you can get back to “normal” as soon as possible. I can’t say that I would do it any differently, but it is one less voice in the fight. No, it’s more than that. Because if that person doesn’t speak out against brain cancer, then there is a large possibility that their friends and family won’t either.

But let’s go back to those too young or too old patients. Why don’t those families speak out? Well, a few of them do. A quick search will find stories of brave little tykes running touch downs or visiting Disneyland. But for every story you see like that, there are more who are too sick to do that. Or who don’t want those precious few days they’ve been given to be taken away by the media and strangers. Or who are just simply too overwhelmed with treatments and symptoms to find a way to reach out.

And those older patients? I think more and more of those families ARE speaking out thanks to social media. But the mainstream media doesn’t care that your 75 year old dad is dying. That is an “acceptable” age to die. Nevermind that people in your family live into their 90’s and your dad was out playing golf the day before he was diagnosed. I know this sounds a little cynical, but I really believe that is the case. I give a lot of credit to the TRBC “sisters” (find them here:https://www.facebook.com/pages/TRBC-for-TRBC/179797368810544) who united via Facebook because they had each lost their dad to brain cancer.

We are finding our voices, but we need your help. It’s not even hard! Here are 5 EASY things you can do to raise awareness for brain cancer research:

1. If you are on Facebook, go like the Operation: ABC “Annihilate Brain Cancer” page (https://www.facebook.com/OperationABC). It lists events around the country and tries to give a unified voice to the brain cancer family. (Oh yeah, we’re a family. You need everyone you can get to help fight this beast.)

2. Sign up as an advocate with the National Brain Tumor Society (http://www.braintumor.org/advocacy). This is NOT scary. You are adding your name to a mailing list, and they will email you when they need your help. “Help” usually consists of using an online form to write your Congressman and encourage more funding for research. Simple as that.

3. Help make a cool postage stamp that says “Stamp Out Brain Tumors”. All you have to do is sign the petition here: https://secure2.convio.net/bts/site/SPageServer?pagename=AwarenessStampPetition

4. Wear Grey Every Day in May. Ok, you don’t have to wear ALL grey. But wear something grey EVERY day. Tell people why you are doing it. Do it for awareness. For solidarity. Do it to show the world that fighting brain cancer is important. Grey isn’t a very noticeable color (like pink) so it is going to take A LOT of grey to get noticed. But we can do it!

5. Attend an event or sponsor one online. I happen to know that even $5 would mean the world to the people who are organizing an event or running a race. For $5, you can tell them that what they are doing matters. Of course, you can tell them with more money, too, but you get the idea.

You can even sponsor our Concert for the Cure online:

http://www.indiegogo.com/projects/concert-for-the-cure-wichita/x/3067213?c=home

I’m gonna go make a donation to a friend’s team right now. Why don’t you join me? 😮

 

Addition: The lovely Amy Moore reminded me that you can also show your support by changing your Facebook profile and/or your cover photo to show your support. If you don’t already have one, there are some great images here: https://www.facebook.com/media/set/?set=a.457134687694742.1073741826.109926575748890&type=1

#greyallmay

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It is Random Acts of Kindness week, which is the kind of thing that keeps my kids at the forefront of my mind. All of them have a deep appreciation for the truly random, and they have made me have an appreciation for it as well. As cool as random surprises can be, they don’t usually have an impact that lasts beyond the moment or the day. Making a big impact takes planning… which got me thinking.

May is Brain Cancer Awareness Month, and we have been pretty vocal about that in year’s past. There hasn’t been much of an impact, though, despite our efforts. I think a big part of that is the lack of a large, concentrated effort. We are all out there doing our own little things, but without an umbrella covering it all and pulling us all closer together. I’d like to change that this year.

Before I tell you how I think we can change it, let me explain why I think it is important to change it:

1. Brain cancer patients frequently can’t advocate for themselves. Why? Well, first of all, the disease is attacking their brains. That means that communication skills can be affected, but beyond just speaking, it can make them more irritated with social situations. Too much stimulation (in the form of conversation or even background noise) can be overwhelming and frustrating. Secondly, if they are not affected by these issues, they don’t want people to assume that they are… so they may try to hide the fact that they are fighting the disease. Some people, like my son, for example, spend much of their time with few visible symptoms and in the fortunate cases, even few non-visible symptoms. They can go on with their lives… but that doesn’t mean the disease isn’t there. It doesn’t mean that their lifespans aren’t being exponentially shortened. This is an insidious disease, and it  may lurk or leave without signs that a casual observer could ascertain. The disease may be defeated, or it may take their life, frequently without friends knowing that they were “that sick”.

2. As clever as it is to use grey as the awareness color for a disease affecting our “grey matter”, the color grey is as “blah” as you can get. Think about it. If an NFL team decides to wear pink for breast cancer awareness, they have immediately gotten everyone’s attention. Pink is bright. It is unusual for a man to wear. But grey? Everyone wears grey. It’s the “new black”. It’s plain, and dare I say it, a little boring. If we got every major league baseball team to wear grey in May, you may not even notice. Half of them already have grey uniforms! It’s not outstanding in any way.

3. There is no marketing firm working on brain cancer awareness month. Breast cancer has some pretty heavy hitters who are willing to spend large portions of their budget on marketing and public relations to influence companies to help them make an impact. Brain cancer charities spend their budgets on research. Frankly, I’m pretty happy that they do, but if we want their money going to research, we need to help them out with the marketing.

So here’s what I propose:

1. I think we should ALL use #greyallmay for all of the events that we do. Whatever brain cancer organization you are raising money for, tag #greyallmay. We can build some sort of basic webpage to rally everyone and explain why this is an issue. We can list links to the various organizations that are making a difference in brain cancer research. We can post pictures of people going “greyallmay” to build the hype.
2. The rally cry should be for everyone to wear grey every day in May. Is that a commitment? You bet it is. But I figure if Johnny Cash can wear black every day of his life, we can all commit to one month a year.